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A program for youth leaders leaves me optimistic for the future
A couple weeks ago, I had the privilege of participating in a unique event designed for higher education students here in Singapore. It’s offered by Youth Corps Singapore to foster a sense of service among the next generation of leaders. As one of three ambassadors representing the Muscular Dystrophy Association (Singapore), I shared my experiences…
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Quest Podcast: Unpacking Disability Pride- Voices from the MDA Community
In this Quest Podcast episode, we chat with MDA Ambassadors, Payton Rule, Fred Graves and former MDA National Ambassador Amy Shinneman. Payton shares a journey of transformation from self-doubt to pride, emphasizing how important community has been in helping her feel seen and valued. While Fred offers a perspective rooted in resilience and advocacy, discussing…
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Households caring for DMD patients face high costs: US survey
Households incur substantial costs to accommodate people with Duchenne muscular dystrophy (DMD), according to a survey of patient caregivers in the U.S. Costs, such as those for purchasing and/or modifying an accessible vehicle, relocating to or building an accessible home, modifying home entrances, and buying medical equipment, were particularly high for households caring for patients…
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In Case You Missed It…
Quest Media is an innovative adaptive lifestyle platform from MDA. With the power of this platform, we foster awareness and empowerment and have important conversations with experts, thought leaders, and members of the neuromuscular disease community about topics that matter to them and to the larger community of individuals with disabilities. With so many valuable…
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Understanding MDA Advocacy’s Education Policy Efforts
At MDA, we believe that students in the neuromuscular community deserve to pursue their own education, career goals, and dreams just like their peers do. To do this, we know that we must equip students and their families with the tools to advocate for their needs in the classroom. There are several developments related to…
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What risk vs. reward looks like in the patient world
The reward is that the chocolate cake tastes delicious and leaves you with a nice feeling. The risk is that you just spiked your sugar intake and may gain a few calories that take time and effort to burn off. The risk is that you may get injured, but the reward is an unbelievable rush…
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Medicaid, Reconciliation Passage, and What Comes Next for Our Community
This past week, the federal reconciliation package officially passed. The legislation covers a broad range of priorities, but for the Duchenne and Becker community, one area stands out: Medicaid. Medicaid remains one of the most important support programs for individuals living with Duchenne. From access to specialists and therapies to in-home care and vital medical…
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Giving thanks that my 3 sons with DMD have one another
Summer vacation in the Midwest typically begins in mid-May, and kids return to school by mid-August. Here in Nebraska, that puts us halfway through summer break already. Like most moms, I’m feeling a mix of emotions: grief as I anticipate the end of these few precious weeks home with my children, and slight relief to…
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Disease progression reflected by blood protein signature: Study
Researchers identified a unique protein signature in the bloodstreams of adults with Becker muscular dystrophy (BMD) and limb-girdle muscular dystrophy (LGMD) that significantly differs from healthy individuals after exercise. “We propose that a subset of circulating proteins may be more indicative of disease progression and/or therapeutic efficacy than relying solely on muscle injury biomarkers such…
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Quest Podcast: Service Dogs, Inc. – Paws with a Purpose
In this Quest Podcast episode, we chat with a former attorney who left her law practice to devote her time to building Service Dogs, Inc. Sheri Soltes founded Service Dogs, Inc. in 1988 on the concept of using dogs rescued from animal shelters. Under her guidance, Service Dogs, Inc. has led the industry in combining…
